Spring Grove woman waits for a heart transplant

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(Monica Maschak – mmaschak@shawmedia.com)

Alicia Weber, 31, of Spring Grove, points to the length of her scar from an open-heart surgery. Five years ago, she was diagnosed with Congestive Heart Failure and now needs a heart transplant. Weber wears equipment that controls a Left Ventricle Assist Device, which pumps blood through her heart.

As the 31-year-old Spring Grove resident waits for heart transplant, she never leaves the house without batteries slung in holsters under each arm and a computer strapped around her waist like a fanny pack.

The device – a left ventricle assist device, or LVAD – does a lot of the work for Weber’s heart. It’s literally her lifeline.

She was diagnosed with congestive heart failure five years ago, not long after she graduated from college with degrees in public relations and sociology. Doctors think it might have been caused by a virus, she said.

Her decline had been so gradual that she said it was “slightly undetectable” to even herself and often, even over the years after her diagnosis, to hospital staff.

“You look at her, and she looks good,” said her mother, Pat Weber. “She’s young, and you don’t expect someone that age to have a life-threatening illness.”

It wasn’t until this past summer that her heart really began to fail, plummeting in strength in one month what previously had taken a year.

“You get so worn out with the daily fight to just keep your own sanity, just get through the day physically, emotionally, mentally,” Weber said. “You just get to a point where I don’t want to try anymore. It’s so exhausting. And I had gotten to that point.”

It was her friends and family who kept her going after medicine that should have lasted a year made it only three days, after open-heart surgery and after the implanting of the LVAD.

While the LVAD has given her a little more energy, it also has curtailed some of her simple freedoms. She no longer can drive a car and she can’t swim – or take baths – anymore.

It’s while talking about her friends and family – and the fundraiser they’re planning – that Weber chokes up. It’s helped her find the positive, she said.

She said she wants to use her experience as a lesson to others to trust their guts about their health, be their own advocates, and for parents not to take viruses lightly.

“My whole life up until 26 was go, go, go, go: college, working two jobs and an internship,” Weber said. “And then to be told slow down, slow down, slow down, slow down, and then to pace yourself and take it easy – I don’t know how to do that.

“That is part of my journey. ... I think that perhaps my life was going in the wrong direction. This was my higher power’s way of redirecting me, slowing me down.”

About the fundraiser

A fundraiser is planned from 5 to 9 p.m. Thursday at The Shores of Turtle Creek, 7908 Winn Road in Spring Grove. Admission is $10. There will be a cash bar, entertainment and appetizers.

Donations also are being accepted at Alicia Weber’s “Hope for a New Heart,” Harris Bank, 1310 S. Route 12, Fox Lake IL 60020.

To learn more about Weber, go to caringbridge.com and after signing up, search “aliciaweber.”